Following Christ, Blogging about Brain Cancer, & Life

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There is this horrible ripping apart of our families, friends, children, and spouses when our children are diagnosed with cancer. My son has brain cancer. He was 3 when he was diagnosed. I moved into the hospital and lived there for 6 weeks after my sons’ surgery. From the PICU, then to the cancer ward. I was in such shock, I actually forgot I had another child at home. But, you see, it is a lot to digest when hospital language is thrown at us in a rapid pace. We are seeing a lot of people, but not a lot want to talk about anything that pulls the full experience together. At first, we had a lot of visitors that all wanted to help. But, I was so confused, I never knew what to ask for. My brain was completely submerged in cancer land.

But, we pull ourselves off the sofa in the room at 5:30 for a team of Dr.s that just throw more jargon at us. The hospital is an unforgiving place. We watch our bank accounts crater. A parent is susposed to be present at their childs bedside unless otherwise discussed with the nurse. If i needed a cup of coffee and breakfast, I had to pay for my own in the cafeteria. Parking is expensive, but they knock it to 4.00 if you get it validated. I would say it was about $30 a day to sit by our childrens bedside for 6 weeks. I will do the math for you. $1260 cash out of the pocket. Eventually the tide of people slowly ebbs away. This is where things get tricky.

By the time we were on the onco ward and doing rehab, I don’t think anyone was around. A few texts and visitors here and there. The only consistent people we saw were nurses, doctors, aides, pt, ot, and speech therapists. You are the glue holding us together. You are the people filling my inpatient days. You become the only source of adult conversation in our days. We look forward to our favorite therapists and support staff. It becomes like a psuedo replacement of normalcy. Just enough for us to feel human. We begin to feel like you are part of our family. We see you every day. You offer hope, encouragement, and conversation. When we get a different therapist when your off, it feels akward. But, we will take any adult conversation at that point about anything except cancer. You are the light of our days.

The shock when we actually get to leave is so lonely. We say goodbye. Goodbye shockingly feels like a funeral procession in our brains. Who is going to tell us how, what, when we need to change something for the better for our children. When I say funeral procession, you have no idea how real that feels to us.

Leaving the hospital setting after such a long time leaves us shell shocked. I remember it really seemed like insanity to take our child home when he was all broken and couldn’t do even the most basic things without help. Shell shocked is a damn good description. How can leaving all these people who have cared for our son be ok? What are we supposed to do? We are still in the lonely horror in our lives and its time to take stock.

Shortly after wheeling our children into the house, I just remember it feeling so scary and foreign. What do I do? Ok, make appointments. Outpatient therapy. Back to back appointments were once a week. Then drs and specialists in between. Once again, our new pseudo friends. We bring them our broken children in hope of a miracle. The cycle of appoints went for 1 year and 3 months weekly.

The first time our PT approached me with the news that its time to take a break from therapy, I cried. What was happening here? He is almost 5. In my brain I always spoke to myself, we have until 5 years old before the neuroplasticity of his brain was extra active and prone to making new pathways. What did she mean, take a break? My kid is still broken. I took John John home and cried. I had this magic number in my head of a perfect little baby of mine that wasn’t fixed yet. We still had a few months before he turned 5. Where had my magic window gone? My world shattered into a million pieces of reality. She was my friend, she helped john learn so much. All of the therapists, receptionists, nurses. All gone. But, there was so much more to me in the appointments. I had great conversation with her while my child was gently pushed further and further to the child I knew. My heart was broken and reality came crashing down again.

We parents can forget that you have a life outside of your job. Home is so difficult and we have so many problems to tackle. You were with us when the date came where he beat his death sentence. But, we can’t be real friends. It is not professional. You, caregiver, you did a tremendous amount of work, and now your job is done. It is so hard to settle into the quiet of our responsibilities at home. Using all the tricks you shared with me to help John progress a little more at home. You reminded me gently that we were allowed to go enjoy summer. John is doing great and he has progressed tremendously.

Now almost 4 years later, we barely need to see you. But, you were there if we do need you. It is sad and scary all mixed up with this whole cancer thing.

I guess what I want to say, is thank you. You know who you are. You all hold a special place in my heart.

My postings have been a bit raw lately. It has actually been a very good summer. I love it when the kids make things for me at school. I save everything.

Well, one day John John gave me this ripped up paper. At first, I did not understand what it said. So, I asked him.”Mom, I made you this sign. You keep it, ok? ” Ok, no problem dude.

I laid it down on my lap and depicted the lines of a song. It read, will you know my name if I saw you in heaven? Would it be the same if i saw you in heaven?

I think my heart shattered looking at that piece of paper. We don’t talk about it. When I hear of another child in my mommy cancer group, I start to think, what if it were my son? I can hardly look at some of the parents posts. It becomes so confusing when I say to myself, My kid is not going to die of this damn brain cancer. And then another child dies.

I only allow my brain to absorb as much as I can think about without crying. But, there it is on a ripped up sheet of paper…sitting on my desk. I cried.

Will you know my name? Dear Lord, my heart hurts for all of these kids. I know that John John thinks about it in the abstract. He somehow is relating it to himself. I think he is trying to get a little more understanding about death.

In this house, we do not talk about death often. Only life. I pray every day that it will never be John John. Life is so very precious a commodity in this house. We all have losses of different kinds. I was telling my husband a few weeks back about one of our friends in the cancer groups. A little boy. It took three weeks from when the cancer all over his body for him to get his place at Jesus feet. I saw that look on my husbands face. We were both thinking the same thing. He said one simple thing, “I can’t”.

I can’t either. there came a time that this whole brain cancer thing became not a thing in our house. We’re all so normal. Our family is what we spend time thinking of and living. Dying is just not part of it. MRI to MRI sometimes holding our breath. After an email or phone call, a sigh of relief, were back to normal. It’s intensely normal. School, homework, church, fun stuff to do, new things to explore. WE ARE NORMAL. At some point we have been desensitized to the words that are suppose to describe our son. He is not cancer. His name is not brain cancer. His life is not on a timeline any doctor can find. We are not measured, labeled, or succumbing to anything cancer-related.

I have been noticeably absent for the last few months. It seems that the complexities of my life have engulfed me, chewed me up, and spit me out. Exhaustion and apathy have won. The veritable pace I have been living life at has come to a much needed screeching halt.

I sit back and think to myself, how do you really bring people far enough into your world that they can catch a glimpse of understanding? I was driving to my shrinks office today, letting my mind wander through traffic lights and cars speeding past. I sifted through the layers upon layers in my heart and tried desperately to turn the images in my head of layers of happenings into words. I sat with the realization that I live most of my life absent from the present.

I sit so comfortably in the spectator’s seat with a front view of my own life, detached and ambivalent. The words that seep out of my mouth are just words. They have absolutely no feeling anymore. Exhaustion. Cancer. Terminal. Hurt. Devastation. Dissolution. Hopeless. Despair. Time flying by and slipping through my fingers into yesterdays in a fleeting pile without any recognition of meaning.

I have become so comfortable with not feeling anything. I have become a ghost in my own life. I have been too happy to just let joy go out the window with fear. I have become content drifting on the wind, happy to mean nothing to anyone. Pleased to disappear into the time voids in between work.

When the hell did life become so damm painful. When did my heart get so thoroughly obliterated that it no longer feels? How the hell did the horror of the bad eat the good right out of existence? I am just not sure. I sit here and try my damnedest to feel something again…Tears. It always comes out in tears. Hot, burning, painful life. I simply can’t remember the last time I felt joy. I catch glimpses of it every now and then. It is so fleeting, like a whisper of silk softly kissing my soul in the form of a distant memory…

I am learning how to cry again. I am learning how to feel pain. I am slowly clawing my way up from the depths of despair and hopelessness. I know that with the fresh deep pain of my life, will come joy.

This summer is almost over. It is hard to believe. Two weeks from tomorrow and I will be taking those cheesy first day of school photos.

So, I will start with the big news. STABLE MRI! Whoah, slow that down for a min. What does that mean? Technically, John is terminal. He was predicted to be dead two and a half years ago. Technically, John’s cancer began to spread again 2 years ago. Technically, stable means that cancer is doing absolutely NOTHING. It is not behaving as normal brain cancer would. It is just sitting there hanging out…….for over two years. What does this mean? PRAISE GOD, THAT’S WHAT! Here are some photos…..My favorite photos of the year.

The first photo is of his original tumor we discovered on May 29th, 2013. What you are looking at is the right side of the photo. That huge mass full of black spots that is slightly brighter than the gray surrounding it is his brain cancer. The left side of the brain has a big black hole. That is his ventricle. It is blocked and full of fluid. It should not look like that. If you follow the midline of his brain, it is physically situated over his left eye (its actually opposite of the MRI, but for simplicity purposes we will use the left and right of the MRI image) Follow the midline and see how it is pushed all the way next to the ventricle on the left side? That’s how massive his tumor was.

The second MRI image is the day after surgery. There is only a tiny rim of actual tumor left that is indistinguishable from the white you see. The white you see is not cancer, it is blood and inflammation. The giant hole on the right is where that tumor was. The space in the (top) front of his skull is full of fluid. His original tumor bed would over a year collapse and his brain would readjust itself. See how smashed up his brain was?

The third MRI images are hard to get a close up on. The two side by side images at the top of the screen are of the same plane of the brain. On the north edge of the black circle where his original tumor used to be is cancer that has been sitting there for over two years. Doing nothing. Obviously white, obviously cancer (from what the Dr. says), and kind of looks like a puzzle piece. Here’s the thing. These two images, side by side, are 8 months apart. He is a miracle. Even a slow growing cancer would not stop multiplying for over 2 years.

He is a miracle. This, folks, is what God calls a miracle. These images are proof that God still does Miracles. I will shout it from the rooftops till the day I die. No chemo, no radiation, just surgery, lots of prayer, anotinting, trusting God, and waiting. BTW, he has anaplastic ganglioglioma. Google the cancer, it is one of the deadliest on the face of the earth. I don’t claim to know how God always works. After all His ways are not ours. But, God stopped it in its tracks. Its insane for me to look at the evidence that my son has terminal brain cancer with regrowth, and its doing nothing.

When people ask me how my son is doing, I kind of get stuck. Then I break out into Praise. It really is amazing. When I tell people he is fine, they are amazed. 24 other people were with me in the room the day he had surgery and heard how horrible the news was. I know that this testimony will reach far and wide. God’s grace and mercy are abundant. He knows the desires of our heart. He hears our prayers. He loves us deeply. Some folks think that they have to give their kids over to God at 18, when they drive away to college. I learned I had to give mine over from the beginning.

So, today was a routine MRI to check for new brain cancer in John John. We have had so many debacles with the hospital. They classified him for general anesthesia only. Uh…..no….that is not happening. I fought for three weeks to get it acknowledged that he is indeed a candidate for the propOfol protocol at the Berger Center at CHOP. So, MRI scheduled for today.

Now, we have had emergent reactions to pentobarbital for a year now. I finally put my foot down and said never again. It was terrifying for me and for this poor kid. I have been punched, kicked, clawed to blood, and head butted during emergent reactions. They last an hour or more. It is an emotionally draining, physically daunting, horrific event that your child has no memory of. But, dear Lord, I do remember. Nothing like getting a shiner from your kid. He almost de-shirted a nurse. Hell, on a good day, like today….he ripped a nurse’s gloves to shreds because of fear over an iv. This kid has been through hell and back. I don’t have any other way to say it. It is trauma. He has been traumatized. From the age of 3, he has been in a world most adults can not cope with. He is scared. Of course he is. I am too.

I MRI alone. Steve thinks yelling accomplishes a lot. It does not. It makes John worse. I can at least calm him down when it’s just me. I know the ropes and how to set expectations and such.

Today was a new deep sedation protocol. It is the best around, the propOfol protocol. Minimal drugs. (one). Shorter recovery time. No more taking home a drunk kid. But…

The IV didn’t go well, even though he was prepped to the max. An hour after his scheduled scan, 6 people, including me had to hold him down to get the iv in. It was a moment I almost lost it.

Rule #1 : Never lose it in front of your child

So, IV in……I watch them hook up the more complicated IV lines than the normal set up. I ask the dosage of the propOfol. 40mg bolus. I am happy they rounded down. But, I did not realize that how fast they pushed it made a huge difference in reaction. I know the half-life of the drug is relatively short. I have even had it. But, not when I was 7.

Oh My Gosh. I am pretty sure they pushed it too fast. His back arched, his eyes became as large as saucers, and he whispered, “help me, help me, help me”. Dear Lord in heaven. I held him and spoke softly in his ear. I could only assume he felt as though he was falling. I whispered “mommy has you, you can’t fall out of my arms. You are safe and everything is ok.” And in 20 seconds he is unconscious and in the Berger Center, they are exiting you out of the room. I wanted to stay to watch him recover from the expected apnec pause after a bolus of sedation. Nope. Not allowed. I stayed. I held his head and pulled up his gown. I watched for him to breathe and when I was ok with his sedated state I left.

I just can not process beyond that right now. I did not get same day results like I did with Dr. Kang. In fact, we went to the clinic and Dr. Waanders told us it would take two or three days for results (calling bullshit). Dr. Kang always called us right away. The anxiety builds and builds.

Your mind wanders into the places it shouldn’t. Does the barometric pressure cause headaches in him? Does he need serial casting for the changes on his right side? I have given him Motrin 9 out of 17 days, is he having rebound headaches? Is he dying? Is his tumor back? Is this nothing except worry? Is his falling more often because he needs more physical therapy? Is he ok? Is he living or dying? Are the holistic treatments working? Am I giving him enough fresh squeezed juice and veggies? Do we need to beef up his supplements? Oh Dear Lord, you know my mind can go a million miles an hour.

When there is no direction, blazing a path can seem like an impossible thing. But, with God ALL things are possible.

I think next time, I will ask for his drugs to be pushed much much slower.

This post is very difficult for me. I am trying to not disclose what the real deal is. I lost my car this week. The red wiggles van. We are downsizing. I am very sad to say goodbye to the only new thing I ever owned. so, goodbye red wiggles van….

I am sad and sorry all at the same time. there is no sadder than i am now.

I have struggled since November with some sort of elusive illness. It has attacked my left shoulder and elbow. It has gone into my chest and back on that side. It has since traveled to my other shoulder and hips sometimes. It is an agonizing pain that does not let up. It hurts me to my very core and I have limited life function since this has happened. I have not been able to type or relay the massive miscommunications turned into personal vendettas this has caused. It has been a mess. A real mess. Of personal relationships I did not understand the misfirings of and vindictiveness I never fathomed. I have an unknown autoimmune disease.

John is doing wonderfully. I need to interrupt my 40 -50 apts trying to get into Penn medicine to meet his new oncologist. Tammy Kang has relocated to Houston after her fellowship at CHOP. It is ok. I need to figure out his next MRI, but after I take a break in Texas. It has been a long hard ride. I need to spend time with my father and my daughter.

The kids are wrapping up school and today I am reminded, God is FAITHFUL……three years ago today we went strawberry pickin with friends and this happened. Three years later after a diagnosis on one of the most aggressive brain cancers on earth…..we outlived the 3-9 months sentence, by three years…..Life continues on. John has completed the first grade with a modified curve. He needs to catch up in reading the most. He is still at a kindergarten level of phonics. I found a free official reading program that he gets for free because of his terminal illness and missing school. I also have Ann Lewis to help tutor him through the summer so he can catch up. The toss up is whether he stays in Mrs. Gross’s class or moves on to Mrs. Tower’s class. His report card will read second grade regardless because of his IEP. He needs strategic location on the first floor of the school. He has hypotonia, which means he has generalized muscle weakness. Up and down those stairs is a hot mess 6 times a day when you have a leg brace and you can’t feel one foot. We must allow him to make the choice based on his modified social status. He needs to feel he is learning and with his peers. I will allow him to make this decision.

My best friend since I was in the single digits bought him a touch screen computer for school. It is pretty damn awesome. I never planned for education. I never saw John John alive for three plus years past his diagnosis. Praise God for even in my unfaithfulness…..HE is here with us always. God shows up even when we think HE will not. John John is provided for by Gods grace and Julie and Scotts generosity. John can catch up with his reading through the summer.

I will leave you with some photos of field day. You will love them. The kids had a great time. Thank you God for a school that wanted my kids. We are a hot mess, a beautiful mess for sure…….